I wanted to share a few unorganized thoughts about Tyler on his third birthday.
His birth is one of the most memorable days in my life. He was born early in the morning, after another long night of labor for Kristine. It was around 3 or 4am, Kristine did great and everything went smooth. When he was delivered he was quite blue and was taken to get some oxygen. I was worried and went over and he pinked up and was little (6lbs), but otherwise looked beautiful. We held him, Kristine nursed him, and we fell asleep for a few hours. At 7am we were woken up by the nurse. It was an awkward conversation, but she was trying hard and had a good heart. I don’t really want to talk about all of that, but needless to say, the next few hours of that day changed our lives forever. At the same time, Maddie and Josh were being watched by our friends, and I needed to get back to them. Once things were stable with Tyler, and thankfully he didn’t need surgery on his heart, like half the kids with Down syndrome, I drove back to our house to go pick up the kids.
I don’t know if I ever told Kristine this, and I don’t think I told our babysitter this, but I just couldn’t quite go pick up the kids just yet. All of their excitement and energy, and wanting things, and, well, I just wasn’t quite ready. So I went running. I ran up and down the neighborhoods, no music or anything, just ran and ran. I was thinking about Tyler and at one point I started to cry (though I kept running). What set me off was thinking about what I would do the first time someone made fun of Tyler—how I would want to punch them in the eye. Then the thought of what I would want and teach Josh to do the first time he heard someone make fun of Tyler (the same thing) and then how that can be reconciled with my religious beliefs (I think I have a strong case). I then thought if I had ever make fun of someone like that. Thankfully I had a pretty guilt free conscience, a benefit of shyness. But I did remember making fun of one kid in the eighth grade, actually I was a bystander with a jerk of a friend, but I was guilty nonetheless. My mission made me remember him and years ago I begged for his apology and made amends.
Anyway, I just kept running, thinking of growing up, what plans will change, camping trips somehow was a big one to me, finances, vacations, couple missions, all sorts of stuff that goes along with it. It was the beginning of a long list of reconciliations that Kristine and I have both been making. But I had a start, so I finally I went home and got dressed and picked up my kids and went straight to Tyler to show him off to Mats and Josh. (of course telling the babysitter, “thanks so much, got here as fast as I could.—sorry Amy)
The day we brought Tyler home from the hospital we went to our pediatrician and found out he had very thick blood—termed polycythemia. This is common in Down Syndrome, and he would have to be admitted to the Neonatal Intensive Care Unit to partially exchange his blood. It’s a relatively simple procedure where you basically water down his existing blood with Saline. But I remember the neonatologist taking me into his office to explain what was going on. He offered me a bagel and coffee, and wanted to write out all the possible complications. I thought what this must be like if I didn’t have any medical knowledge. Tyler then was taken to the NICU and they started sticking all these lines in him and the monitors and all of that. I had to step out for a minute. I ran across the street to a Panera Bread shop. I got a cup of soup and just sat there thinking about everything in the last 3 days of my life. This took maybe 10 minutes, I didn’t want Tyler to be alone too long, but to this day I can smell that chicken tortilla soup at a Panera Bread. It was fantastic, but I rarely get it now--just too much memory flooding.
Another thought I wanted to share occurred some months ago in my pediatric clinic. There are lots of residents seeing patients, and staff helping us when we are unsure of something, and we all get along really well. We all convene in a room to present the patients and write our notes in between visits. So one day a resident bopped into the room and was laughing. Another one asked what was up and she said—“nothing except that mom is a retard!” Everyone burst out laughing. It was quite unexpected from her and caught us all off guard. I chimed in with “what do you mean.” She said coyly, “she’s just a total retard…” and everyone again just laughed. So it was lighthearted and totally innocent, so I said jokingly “like my son.” She just stared at me and everyone got real quiet and I felt bad (cue the crickets chirping.) She didn’t say a word. So I just said, “you mean she’s retarded just like my son, right.” She didn’t know at that point but others did. I wasn’t quite sure what to say, I felt bad, but I wanted to be sure to get the point across. Fortunately a staff jumped in and turned it into a teaching point by asking me how I would like my son referred to. Please keep in mind this resident was and is a good friend of mine, and I said it as casually and openly as possible—it was not this stern put down. So we got into a discussion how “retard” has been taken out of context from its original medical term and is slang now and unfortunately has taken the same path as the medical terms: idiot, moron and imbecile (those were the definitions of mild, moderate and severely retarded before the new definition.) So now the medical community has to change the definition again, and will do so next year in the fifth DSM manual.
In case you wanted to know, it will likely be termed mild, moderate, and severe cognitive delay. This way it hopefully won’t turn into slang for people to say at the Jazz game, “man that ref is so cognitively delayed.”
So these situations have arisen much more often than you might think. It has always been easy for me to say something—yes I even did it to an attending once. From best friends, to patients, church, I can think of dozens of times. All ended well, except for one that I won’t go into.
Another thought I had about Tyler was at about 8 months of his life when we went up to Jessie and James’s (my sister and brother in law), who had a daughter less than a month after Tyler. We’d seen them before and got pictures and all of that, about a month after their births. But this time little Naomi was crawling, playing, grabbing and eating, almost by herself, babbling, and was just huge compared to Ty. We had a blast on our visit, but I again had to go for a run after we had arrived and I had observed these differences for a bit. Luckily Jessie lives by this awesome dirt trail up in the hills (yes of Akron) and you can run forever. I remember making a few more reconciliations and was much more at peace about watching developments of different kids from that point on.
I guess another thought I had about Tyler is basically the very first thought people kept telling me when he was born…That he was “special” and I was somehow special (that God chose me to raise him up.)
I think of that word “special” a lot. It’s charming and comforting, and I like to think of myself as special, and especially Tyler as special. But Kristine and I have joked that one time, since it happens so often, when someone says “oh Tyler is so special, you’re so lucky blah, blah, blah” that we would respond “yea, we were sad our first two kids weren’t special, so luckily we got him now.” I haven’t done that one yet, but I’m keeping it in my back pocket so be prepared—maybe at the zoo or something where I’ll never see them again.
The point, which I think most would agree if thought about, is that I believe all of my kids are special, Tyler no more so than Josh or Maddie; and, quite frankly, my kids no more so than yours. And I think any person being able to have a child is a miracle. As far as the whole idea that I have been chosen by God to raise Tyler so I must be special, etc, well, I’ve seen way too many “special needs” children born to awful and inept parents to think God is only giving those children to select parents--Unless of course God is trying to make judgment day easier on Himself by setting up people for certain failure. So to me, having Tyler born into our family was one of those things that nature does once in awhile, and fortunately for us, Tyler was strong enough to survive the mutation in his genes (more than 90% of fetuses with his mutation die in utero). So we look at it simply as that Tyler is strong. Josh and Maddie find that out daily. I now cannot imagine life without him. I think he brought happiness into our life, and marriage, that wasn’t quite there.
My father once made a comment about raising children, in the context of talking about a young man who had lost his way, gotten involved in drugs and was trying to get back but struggling. I will probably butcher his comment, but in trying to recap, he said that the key to raising kids is to maintain their innocence for as long as possible. I was surprised to hear that—I would expect something about loving unconditionally, establishing a work ethic, something like that. But distilled down, I think his point is quite compelling. Tyler, to me, brings that to our family. He is in love with everything, sees no wrong, except injuries or not getting his food on time. So quick to forget, he’s thoughtful, even without speaking, he can comfort and soothe anyone. He loves to play in the dirt and walk barefoot and watch the sky with me at night.
I guess my final thought, at least for now, is that I love Tyler just being Tyler. All I want to do as his parent is keep him safe, protect and feed him, while I let him be the best Ty Guy he can be. And most of the time that means to just get out of his way as a parent –literally and figuratively(that’s true for all my kids to be honest, I think they are so good now they need no teaching, just a dad that won’t screw them up.) A scary side, to me, of the parents of disabled kids is to set unrealistic, or more important, unnecessary goals for their kids to complete their “integration into society,” with school, sports, workforce, marriage, etc--not that Tyler won’t go down those roads, but I just want Tyler to be who he is, to reach his own goals and not mine. If he wants to go to high school or college, I’ll get him in, if he wants to get a house, I’ll be prepared, marriage, well, we’ll see, and if one day, he decides to speak to me, I’m ready to listen.
I love you Tyler, I hope I can be a good dad for you.
I don’t know if I ever told Kristine this, and I don’t think I told our babysitter this, but I just couldn’t quite go pick up the kids just yet. All of their excitement and energy, and wanting things, and, well, I just wasn’t quite ready. So I went running. I ran up and down the neighborhoods, no music or anything, just ran and ran. I was thinking about Tyler and at one point I started to cry (though I kept running). What set me off was thinking about what I would do the first time someone made fun of Tyler—how I would want to punch them in the eye. Then the thought of what I would want and teach Josh to do the first time he heard someone make fun of Tyler (the same thing) and then how that can be reconciled with my religious beliefs (I think I have a strong case). I then thought if I had ever make fun of someone like that. Thankfully I had a pretty guilt free conscience, a benefit of shyness. But I did remember making fun of one kid in the eighth grade, actually I was a bystander with a jerk of a friend, but I was guilty nonetheless. My mission made me remember him and years ago I begged for his apology and made amends.
Anyway, I just kept running, thinking of growing up, what plans will change, camping trips somehow was a big one to me, finances, vacations, couple missions, all sorts of stuff that goes along with it. It was the beginning of a long list of reconciliations that Kristine and I have both been making. But I had a start, so I finally I went home and got dressed and picked up my kids and went straight to Tyler to show him off to Mats and Josh. (of course telling the babysitter, “thanks so much, got here as fast as I could.—sorry Amy)
The day we brought Tyler home from the hospital we went to our pediatrician and found out he had very thick blood—termed polycythemia. This is common in Down Syndrome, and he would have to be admitted to the Neonatal Intensive Care Unit to partially exchange his blood. It’s a relatively simple procedure where you basically water down his existing blood with Saline. But I remember the neonatologist taking me into his office to explain what was going on. He offered me a bagel and coffee, and wanted to write out all the possible complications. I thought what this must be like if I didn’t have any medical knowledge. Tyler then was taken to the NICU and they started sticking all these lines in him and the monitors and all of that. I had to step out for a minute. I ran across the street to a Panera Bread shop. I got a cup of soup and just sat there thinking about everything in the last 3 days of my life. This took maybe 10 minutes, I didn’t want Tyler to be alone too long, but to this day I can smell that chicken tortilla soup at a Panera Bread. It was fantastic, but I rarely get it now--just too much memory flooding.
Another thought I wanted to share occurred some months ago in my pediatric clinic. There are lots of residents seeing patients, and staff helping us when we are unsure of something, and we all get along really well. We all convene in a room to present the patients and write our notes in between visits. So one day a resident bopped into the room and was laughing. Another one asked what was up and she said—“nothing except that mom is a retard!” Everyone burst out laughing. It was quite unexpected from her and caught us all off guard. I chimed in with “what do you mean.” She said coyly, “she’s just a total retard…” and everyone again just laughed. So it was lighthearted and totally innocent, so I said jokingly “like my son.” She just stared at me and everyone got real quiet and I felt bad (cue the crickets chirping.) She didn’t say a word. So I just said, “you mean she’s retarded just like my son, right.” She didn’t know at that point but others did. I wasn’t quite sure what to say, I felt bad, but I wanted to be sure to get the point across. Fortunately a staff jumped in and turned it into a teaching point by asking me how I would like my son referred to. Please keep in mind this resident was and is a good friend of mine, and I said it as casually and openly as possible—it was not this stern put down. So we got into a discussion how “retard” has been taken out of context from its original medical term and is slang now and unfortunately has taken the same path as the medical terms: idiot, moron and imbecile (those were the definitions of mild, moderate and severely retarded before the new definition.) So now the medical community has to change the definition again, and will do so next year in the fifth DSM manual.
In case you wanted to know, it will likely be termed mild, moderate, and severe cognitive delay. This way it hopefully won’t turn into slang for people to say at the Jazz game, “man that ref is so cognitively delayed.”
So these situations have arisen much more often than you might think. It has always been easy for me to say something—yes I even did it to an attending once. From best friends, to patients, church, I can think of dozens of times. All ended well, except for one that I won’t go into.
Another thought I had about Tyler was at about 8 months of his life when we went up to Jessie and James’s (my sister and brother in law), who had a daughter less than a month after Tyler. We’d seen them before and got pictures and all of that, about a month after their births. But this time little Naomi was crawling, playing, grabbing and eating, almost by herself, babbling, and was just huge compared to Ty. We had a blast on our visit, but I again had to go for a run after we had arrived and I had observed these differences for a bit. Luckily Jessie lives by this awesome dirt trail up in the hills (yes of Akron) and you can run forever. I remember making a few more reconciliations and was much more at peace about watching developments of different kids from that point on.
I guess another thought I had about Tyler is basically the very first thought people kept telling me when he was born…That he was “special” and I was somehow special (that God chose me to raise him up.)
I think of that word “special” a lot. It’s charming and comforting, and I like to think of myself as special, and especially Tyler as special. But Kristine and I have joked that one time, since it happens so often, when someone says “oh Tyler is so special, you’re so lucky blah, blah, blah” that we would respond “yea, we were sad our first two kids weren’t special, so luckily we got him now.” I haven’t done that one yet, but I’m keeping it in my back pocket so be prepared—maybe at the zoo or something where I’ll never see them again.
The point, which I think most would agree if thought about, is that I believe all of my kids are special, Tyler no more so than Josh or Maddie; and, quite frankly, my kids no more so than yours. And I think any person being able to have a child is a miracle. As far as the whole idea that I have been chosen by God to raise Tyler so I must be special, etc, well, I’ve seen way too many “special needs” children born to awful and inept parents to think God is only giving those children to select parents--Unless of course God is trying to make judgment day easier on Himself by setting up people for certain failure. So to me, having Tyler born into our family was one of those things that nature does once in awhile, and fortunately for us, Tyler was strong enough to survive the mutation in his genes (more than 90% of fetuses with his mutation die in utero). So we look at it simply as that Tyler is strong. Josh and Maddie find that out daily. I now cannot imagine life without him. I think he brought happiness into our life, and marriage, that wasn’t quite there.
My father once made a comment about raising children, in the context of talking about a young man who had lost his way, gotten involved in drugs and was trying to get back but struggling. I will probably butcher his comment, but in trying to recap, he said that the key to raising kids is to maintain their innocence for as long as possible. I was surprised to hear that—I would expect something about loving unconditionally, establishing a work ethic, something like that. But distilled down, I think his point is quite compelling. Tyler, to me, brings that to our family. He is in love with everything, sees no wrong, except injuries or not getting his food on time. So quick to forget, he’s thoughtful, even without speaking, he can comfort and soothe anyone. He loves to play in the dirt and walk barefoot and watch the sky with me at night.
I guess my final thought, at least for now, is that I love Tyler just being Tyler. All I want to do as his parent is keep him safe, protect and feed him, while I let him be the best Ty Guy he can be. And most of the time that means to just get out of his way as a parent –literally and figuratively(that’s true for all my kids to be honest, I think they are so good now they need no teaching, just a dad that won’t screw them up.) A scary side, to me, of the parents of disabled kids is to set unrealistic, or more important, unnecessary goals for their kids to complete their “integration into society,” with school, sports, workforce, marriage, etc--not that Tyler won’t go down those roads, but I just want Tyler to be who he is, to reach his own goals and not mine. If he wants to go to high school or college, I’ll get him in, if he wants to get a house, I’ll be prepared, marriage, well, we’ll see, and if one day, he decides to speak to me, I’m ready to listen.
I love you Tyler, I hope I can be a good dad for you.
11 comments:
Happy Birthday Ty Guy. We love you. Dave, love your thoughts. I remember exactly where I was that day. I had just walked into the gym put my kids in daycare and was getting ready to run. You called. I was overwhelmed with emotion. My heart was rejoicing in his birth yet so worried about him. I too decided that I needed to run. Wierd huh? I had to run before I could go over to mom's. It is a good way to clear your mind. I love my Tyler. He makes us so happy to be around. I love that kids smile. Jack and Cole love that he is sooooo strong. It will serve him well throughout his life. I love you all.
Linds
Favorite post ever! I love you guys.
dave can you help dan understand the therapeutic value of a good run? he still doesn't seem to get why i like it. i am voting for the dsm v wording to change to "cognitively different." being an aunt i'm sure my love for ty is very different from you as a parent but i can't say i have ever worried about him in your family for one minute. i too can remember exactly where i was when we heard about ty guy, in dan's car in the rain in front of his house, when i finally got to meet him a month later i didn't ever want to stop holding him, he was a perfect little bundle. he's always going to have me, the weird aunt that wants to kiss and squeeze him, hopefully he won't bee too embarrassed i'll try to contain myself.
Wow Dave, what a sweet Daddy you are, and what a wonderful Mommy Kristine is! I loved reading your thoughts and I loved seeing the darling third birthday pictures of my nephew. He is adorable! I have always been and am in awe at your strength, perspective, the thoughts you have shared and the ability to be positive. I can't imagine the love that Tyler brings to your home, I am sure it is hard to put into words. Happy birthday sweet boy and we send all our love! Nance, Sam and kids
Loved reading this! we miss you guys!
I love that you recorded all these thoughts to look back on. Awesome. And, I'm so glad you went on a run and did what you needed to do. I would happily have kept your kids for another week. I actually remember thinking how surprised I was that you got them so fast. I miss seeing you guys!
BEAUTIFUL post David. I certainly love you and feel great joy through your young family. I sincerely thank you for being such a good man, father and husband. And for being so kind to me ~~I love you~~ Liz
Dave,
That last line is a kicker. Pulled those tears out of my eyeballs in a flash.
With the way you and Kristine are, the way you talk and approach life, I have a feeling that the four of us (my husband included) would get along just peachy. I regret that time and distance has prevented building a deeper friendship.
I love this post, and love both of your candid approach to your children and life in general.
And oh... how I wish I could hug little Ty Guy!
Wow. Dave,..you should write a book! You had me hanging on your every word! I was so touched reading this. Thank you for sharing your thoughts...I love your family and I am grateful for the example you show us It doesn't surprise me that Tyler is so strong--just look at his parents! Happy Birthday, Tyler!
That was a really great post, thanks for sharing, Dave. You guys are a wonderful family, it's great to read your thoughts on raising Tyler as well as your other kids. I remember once when we were playing hockey together one of the other guys asked you what you wanted Josh to be when he grew up, and you said, "Whatever he wants to be." Cameron and I talked about it later and both agreed that was one of the first times we heard a parents say that and really mean it. It's a great thing, we're trying to have the same attitude with our kids.
Happy Birthday, Tyler!!
Hello Ormes...
I was finally able to sit at a computer for a while and soak in your loving thoughts about your family. Thank you for sharing what you have written. Your family has blessed us in many many ways over and over again, by inviting us in and spending time. Jesus sure knows how to guide us and give us friends in every stage of life. I am thankful to him for you all. Shalom in Jesus Christ,
Miriam S.
Post a Comment